For adults with multiple chronic conditions, there is room for improvement in engagement with patients and families

February 18, 2020

People with multiple chronic conditions often rely on support from family members when managing treatment and making health care decisions. Yet few documented medical interventions exist that focus on engaging both patients and their families.

This is according to a new study published in Medical Care, which includes research from the UNC Gillings School of Global Public Health and the UNC School of Medicine.

A chronic condition is one that lasts more than a year and limits daily activities or requires ongoing monitoring or treatment. An estimated 42% of Americans are living with more than one chronic condition, such as diabetes and cardiovascular disease. As the complexity of these multiple chronic conditions (MCC) increases, so does the risk of poor health outcomes. This is why it is imperative that health care providers foster the best possible level of engagement with MCC patients.

Engagement collectively includes the activities practitioners use to help patients get involved in the management of their conditions. Most engagement happens when the patient and the provider interact directly, including at medical appointments and over the phone. Many people living with MCC bring a family member to medical appointments, such as a spouse or an adult child, which reflects the level of familial assistance that often occurs when managing MCC. For providers, this is an opportunity to adjust their engagement strategies to involve those

Dr. Carol Golin

Dr. Carol Golin

Dr. Crystal Wiley Cené

Dr. Crystal Wiley Cené

With that in mind, the UNC research team completed a systematic scoping review of published literature to identify any interventions used to facilitate engagement with MCC patients and families. The team included Carol Golin, MD, professor of health behavior at the Gillings School; Crystal Cené, MD, MPH, associate professor at the School of Medicine; Alexandra Munson, MPH, project manager at the UNC Lineberger Comprehensive Cancer Center; and Claire Sadeghzadeh, MPH, project manager at the UNC Center for Health Promotion and Disease Prevention. The team also included three 2018 Master of Public Health graduates from the Gillings School’s Department of Health Behavior: Obinna Daniel, Alex Dest and Deren Pulley.

Claire Sadeghzadeh

Claire Sadeghzadeh, MPH

Alexandra Munson, MPH

Alexandra Munson, MPH

Part of the study involved identifying the level of engagement in each intervention, categorizing the methods that were used and classifying the types of outcomes that were examined. Levels of engagement were categorized based on studies in 2013 and 2014 that created a framework based on information (the way providers convey health information to the patient), activation (methods used to prompt the patient to ask questions or share concerns) and collaboration (methods used to cultivate an ongoing conversation between the patient and the provider). The highest level of engagement was one that involved information, activation and collaboration.

The review found that less than one third – 26% – of interventions partnered with patients to create dialogue instead of simply telling patients what to do, and of this 26%, only one intervention was focused on family involvement. Of all the interventions analyzed in the review, only three mentioned involving family members or caregivers at all.

All interventions but one involved engagement with patients on the direct care level. “Although [this] is critically important, there is a need to involve patients at every level that directly, and indirectly, affects them, including organizational design and governance and policymaking,” the team noted in the study.

These results highlight a need for more interventions that promote high-level engagement between providers and MCC patients and families. They also suggest a lack of clarity surrounding the way researchers evaluate and define patient engagement as a whole.

Family involvement is a key social determinant of health and should be considered when designing the most optimal and patient-centered MCC interventions. In order to do this, researchers must first create clear definitions and frameworks which reinforce the need for familial inclusion.

“Engagement of patients AND their family supporters, as the most important members of the health care team, must become the norm in clinical practice and healthcare governance if we truly hope to realize the mission of patient- and family-centered care and not just have it as a tagline,” said Cené.

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